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Dying well

“I JUST want to die now. I am living in hell,” says my 50-year-old cancer patient. “I am sorry to hear that,” I say. “Are you in pain?”
“No, but my husband is angry all day because he is stuck in the anger phase of grief. My son couldn’t stand it so he moved in with his girlfriend, which has made my husband even angrier because my son is ‘living in sin’.”

She continues: “To add to it all, he is angry with my daughter because she drops in each evening on her way home from her hairdressing job, but doesn’t do anything to help. She just sits on the sofa and talks to me, just like she has always done, without ever mentioning the cancer. My husband is angry with her because I make her cups of tea and cook her dinner like I always have and he thinks she should do it. I just want to die now.”

An extraordinary event would change this “living hell” into a happy ending, but more on that later.

As a lung specialist, I have looked after hundreds of patients (lung cancer is the most common lethal cancer) and in the process participated in the “journey to death” of many patients.

Dying is normal, but I have learned there is a way to die well and a way to die badly. I am not just talking about the patient, but also about the family. When the dying process is handled badly, the survivors can be left with a lifelong bitterness. You only have to open the daily newspapers to see examples of bitterness that flow on from badly handled death – rage expressed at the hospital, the doctors, the government or God.

But, when death is handled well, surviving family members often describe a positive effect.

Handling death well starts from diagnosis. This is partly out of the control of the family as it depends a little on whether the doctor or other person giving the news knows how to do it according to best practice.

For the past 23 years I have been responsible for the Breaking Bad News course for doctors at the University of Western Australia Medical School. The right approach involves selecting the right site (a quiet room, with mobile and pager turned off), an empathetic style (sitting down, making eye contact, appropriate touch) and the right words (reaching out with words of empathy, not avoiding the use of the word cancer). The success or failure of that event is not all up to the doctor – it is also determined by the patient and the family.

The patient can feel lonely and isolated. In my experience, it is vastly better if a trusted and significant family member (or friend) is present at that initial breaking bad news consultation. That is because the patient, once they get the bad news, will have trouble remembering any of the information provided from that moment on – their head will be in a spin. It is more likely a loved one will retain the information.

Also, it is too much of a burden on the patient, having received the bad news themselves, to then have to explain it to family members.

It is important to ask the doctor any questions that are on your mind. I remember hearing about a patient that was told they had a malignancy with metastases to the bones. When they told the doctor they didn’t have any questions, he asked, “Are you sure?”

“Yes, I am sure,” the patient said. “I am just glad I don’t have cancer.”

You need to decide whether you and your loved one want to know the prognosis. Not everyone does. I have to be honest and say that in general it is best if they do know, not necessarily at the first consultation, but soon thereafter. I respect the rights of patients to live and die in denial. I just don’t ever see it helping much – short-term gain for long-term loss.

Once the diagnosis has been explained and treatment commenced, the journey to death continues. This sounds like an awful journey, but it can be made better. Here are some of the things I have noted in my practice that have worked well.

First, don’t avoid talking about the cancer. Avoidance is a very powerful reaction, in the patient or among loved ones, even among medical or nursing staff.It is natural to avoid talking about things that make you feel uncomfortable. Indeed, it is often a reflection of love – being so afraid you will say the wrong thing, you say nothing.

Love can also create avoidance in other ways. Because death is about grief, and grief is about loss, and it is difficult to accept that the person is dying, it is easier to offer false hope.

“Apparently there is a new treatment in Mexico” …”I read about a patient with cancer who was healed by a fruit juice diet” … “I am sure the doctors have it wrong” … “Just keep a positive mental attitude and you will be healed”.

Because they are reflections of love, I don’t wish to criticise them. However, they often don’t help the patient. They provide short-term comfort, but in the end increase anxiety and do not help the family to get on with grieving.

Second, having gone ahead and begun to talk about their cancer, don’t continually ask about it – talk about it, but also about the children, the news, the football – treat them as normally as possible without avoiding the issue.

Third, don’t avoid visiting. I often find that when a patient has a diagnosis they will have 20 visitors within the first few days in hospital, yet in the next two months after they go home they have zero visitors. This is understandable because some people feel so uncomfortable they don’t know what to say; as a consequence they “find something else to do”. Be willing to spend some time. Usually it is better if it is not a lot of time.

Fourth, don’t just say “Is there is anything I can do to help?” Take the initiative and do something, like help with shopping, offer to take them on a visit to the clinic, pick up children from school or relieve the family of the duty of care for a day. You might even want to help them pull together a photo album of memoirs that they wish to have for their children and grandchildren.
Fifth, thank them for all of the things they might have done for you in the past, some good times that you have shared together for which you are grateful and their characteristics that you have admired over the years.

I have a magical phrase that I use with my patients, a phrase that has helped every family that I have used it with. “Plan for the worst but hope for the best.” Their doctor may have told them something like, “It could be as short as three months or as long as a year.”

Planning for the worst means planning for the three months. I encourage the patients to plan to do within those first three months (when they will be at their fittest) all of the things they wish to do: going to Paris; seeing Uluru.This approach reaches its most poignant when it comes to writing letters or memoirs for children or grandchildren; for example, letters for their children to open on their 21st birthday – describing their aspirations for them and how much they love and value them and admire them and believe in them for the future.

When they do this their tears fall on the pages. But if the patient waits until the end of their disease course they are often too tired or affected by painkillers to write such letters. I have seen that happen and this is sad because it robs the children of a real gift, the gift of reading those letters in the future.

Avoiding the reality of death is like seeing a black door in the house and walking past it all the time, afraid of going through it, afraid of what is on the other side.

If they do get to the point when they are able to put their hand on that black door handle, turn it, open the door and walk through it, to their surprise they can enter a garden. In that garden there is a lot of expressed love, and they notice that the sky is bluer then they have ever noticed before, that the leaves of the trees are greener and that, because every day is a gift, they live the rest of their life with gratitude.

That is not to say they don’t suffer physically or emotionally in the process, but it is to a large extent the difference between dying badly and dying well.

So what happened to the 50-year-old woman with the angry family? Well, by an extraordinary coincidence, I went for a haircut and I sensed that the woman cutting my hair just might be her hairdresser daughter.
She knew who I was, but was clearly relieved when I brought it up – that told me she was an avoider. I arranged for the Cancer Council Family Counselling Services to visit the family and they all sat around talking about the cancer, overcoming their reluctance, holding hands and crying.

I know this because when I to visited my patient in the hospice, she said to me, “Bruce, great to see you. I don’t know what you said to my daughter, but everything has been transformed. My husband is no longer angry, my son has moved back home and is helping and my daughter is now happy to talk to me about my cancer. In fact, every week she comes in here and does my hair. Thank you so much.”

It is a clear example of someone who could have died badly and left the family with bitterness, but who ended up dying well. I would predict, although I don’t know for sure, that the members of that family would feel their lives were in some curious way enriched by having had that intensely personal and open, caring experience.

Bruce Robinson is Winthrop professor of medicine, school of medicine and pharmacology, at Sir Charles Gairdner Hospital Unit, University of WA, and consultant physician, respiratory medicine, at Sir Charles Gairdner Hospital, Perth.
Source:www.theaustralian.com.au/news/features/dying-well/story

Coping with grief

Grief is a normal and inevitable response to loss, it can affect many aspects of our lives. Grief can seem overwhelming and at times frightening.Grief allows us to gradually adjust to loss and find a way of continuing on with our life without the person who has died.Current knowledge about griefA list of key points that can help us to understand more about grief and loss:

Grief is a normal response to loss and bereavement.

Grief is expressed by individuals in a wide variety of ways.

No one can tell another how they should mourn or grieve.

Confronting and then denying the death is a common reaction for people in grief.

It is rare for complicated grief to require medical intervention.

Social support networks may help to relieve bereavement.

Reactions to grief

How grief affects our mind, body and interactions with others is highly individual. There is no ‘right’ way to grieve. For instance:

Feelings: Intense feelings are common such as shock, sadness, anxiety, anger, disbelief, fear, numbness and even relief.

Thoughts: It may be difficult to concentrate as confused thoughts are experienced. Some people may experience vivid dreams of the person who has died and have a sense of their presence. These are mostly comforting.

Physical: The physical symptoms of fatigue, loss of appetite, nausea, sleeplessness or pain may be physical reactions to grief and loss. Check with your doctor if these symptoms persist.

Relationships: People react differently to grief. Some may turn to being busy and active a lot of the time, others may feel lethargic and retreat to bed. Little attention may be made to self-care. For others, turning to the overuse of alcohol or non-prescribed drugs and other potentially harmful behaviours may occur. Again, talk to a health care professional for advice.

Beliefs: Grief can challenge our beliefs, we may wonder ‘Why has this happened to me?’

There is no right or wrong way to grieve, just as there is no timeline for it. As time passes we learn to manage grief. Some people will want to express their grief by talking and crying, others may be more reluctant to talk. It is important to respect an individual’s way of grieving, even within families.

Self care through hard times.

- Start a journal and write or draw about your innermost thoughts and emotions. This is one way, a private way, of expressing your emotions so that the process of recovery can move forward.

Palliative care book list

Tweed Palliative Support and Wedgetail Retreat Hospice have an extensive library for clients’ use. Helpful resources for children, teenagers and adults. The books below are widely available and may be helpful if you are a palliative care client, carer, health professional, family member or friend.

Care and Grief

After Life, After You: True Stories of Love, Grief and Hope
By S.K Reid

Coping with Grief 4th Edition
By Mal & Dianne McKissock

Grief and Remembering: 25 Australians Tell it Like it is
By Allan Kellehear

In My Own Way
By Dianne & Mal McKissock

On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss
By Elisabeth Kubler-Ross & David A. Kessler

On Children And Death
By Elisabeth Kubler-Ross

Stuck For Words – What to Say to Someone Who Is Grieving
By Doris Zagdanski

Teenagers And Grief
By Doris Zagdanski

The Grief Book: Strategies for Young People
By Elizabeth Vercoe

The Grief of Our Children
By Dianne McKissock

Time to Listen (Originally published as “From the Other Side: How it Feels to be Young and Dying”)By Amber Turk and Margaret Brown

When a Man Faces Grief/A Man You Know is Grieving
By Thomas Golden and Jim Miler

33 Things To Say … When You Know Someone Who Is Grieving
By Doris Zagdanski

What can I say

Finding out that someone that you know is going to die comes as a shock. Reactions such as anxiety, sadness and even anger at the news are all quite common.

The person living with a life-limiting illness will be receiving care that helps them live as well as possible and to stay in control. Support for all their needs with physical, emotional, social, cultural and the spiritual aspects of life are considered. Importantly, this involves caring for the person’s family and carers at this time.

You can play an important role at this time.

Understanding emotions and feelings
Grief is a process and people need time to work through the pain that comes with loss. There is however, no formula for what should happen.

Whatever comes along, it will be helpful to the person and their family to know you’ll be there to support them. Be prepared to listen and recognise their feelings, such as sadness, anger, disbelief, fear and loneliness as they learn to live with and express their feelings. This helps them feel accepted for who they are and gives them dignity. It is a sad time but it can also be fulfilling.

Treat the person who is ill as you always have. Just be yourself.

Understanding the experience of living with a terminal condition

Generally, people with a life-limiting illness make gradual adjustments to the
way they live – everyone’s experience is different. They keep hope alive and may want to explore what it means to be dying. Listen to them and learn to accept their understanding of the new situation. You can help make this journey a little less lonely.

- Managing HealthTo help the person to live each day as well as they can to fulfil their wishes, a range of care is provided by health professionals. This can help to manage the person’s symptoms and side effects they may experience such as exhaustion, nausea and weight loss, including their emotional wellbeing and that of the family and carers.

- Social Activities
Help the person avoid isolation by adapting social activities to suit them and how they are feeling.

- WorkingThe person living with a life-limiting illness may want to keep working, go part-time or leave work. Continue the friendship, use the phone or e-mail to keep in touch.

What can you say?
Continue to speak to the person as an equal and don’t worry that you may say the wrong thing or get emotional. Encourage memories and value the exploration of friendship. These may be ways for the person to say goodbye – just be there to talk and listen.

What can you say to the family?
Let the family know how much you value their loved one and let them know that you support them and feel for them. Offer to help in whatever way you can.

What can you do?
Just your willingness to be there helps to prevent isolation. Your emotional support as a friend and acknowledgement that your friendship hasn’t changed is important.

“Know that you can make a difference by:

- offering your support
- showing your respect
- following their lead
- asking how you can help.

Accepting practical help can be hard at first. Allow the person and their family to make the decisions, and fall in with them.”

Practical ways of helping to alleviate the family’s stress are by cooking, gardening, picking up the kids from school or assisting with visits for treatments.

It’s not an easy time. Remember to give yourself some way of expressing your feelings and relaxing.

After death – what can you say to the family and carers?
“Even when a death is expected it comes as a shock. It’s even harder if people stay away or don’t say anything. Just be yourself – ‘I’m sorry this has happened’, ‘I’m really sad for you.’…There’s no timeline for grief and no solution to fix it. The process of grief is actually part of healing.”

To show you care, ensure that your help meets the family’s changing needs.

How will you care for yourself?
Take time to grieve and value the relationship you’ve had. Stay close to your friends and family.

“A good friend is one of the greatest benefits of being human. You have done all you could.”